Journal

Thursday, July 3, 2008 4:20 PM EDT

Thanks to everyone for signing the guestbook. It really helps me to feel loved. This will be short and I will try to do a more detailed update later. I had clinic Tuesday and counts were:

HGB 8.1 (PRBCs given--2 units)
PLT 8 (platelets held along with our breath!)
WBC 1.9
ANC 875 (neulasta given)

So, it was once again a long day. I was gone from 6am - midnight. I had to take my mom for some minor surgery that morning & she couldn't drive afterwards. So, I got her home, asked my aunt & grandmother to be there with her and then drove myself to Duke. I haven't been feeling all that well the past couple of weeks and was glad to be able to try to get some answers. In addition to the low counts, I have some evidence of liver disease in the bloodwork still. Nothing bad, but something we are watching as iron overload can cause major problems with organs so that's always a consideration since I am WAAAAAAAAAAY overloaded. My last Ferritin was over 4000 and normal is less than 150 I believe, so, yeah, that's a problem. It is also why I am in need of financial help. Added funds will make it possible for me to get on the medication I need to lower my Ferritin--Exjade. Like all the other "keep me alive" meds--it's very expensive.

As for my current status: I'm very swollen with fluid overload and had some problems since we had to give me two units of blood plus my IVIG when I was already fluid overloaded. I'm supposed to get platelets below 10k also, but I could not have tolerated anymore fluid so we skipped those since I'm not actively bleeding and planned to just hope I'll do ok at 8k until we can get the fluid issue under control. Even with limiting the fluid to the "necessary" infusions only, I was in clinic until 10pm with us trying to get my BP down to at least 130/90 (from 152/110 at its highest). We didn't quite get there (to 130/90) but with some sublingual nifedipine and a little time, we started to see a downward trend so they finally let me go. I am still experiencing the swelling in my legs/feet/ankles & fingers along with severe headaches & dizziness. Accompanied by the normal IVIG issues (headache, fever, nausea) things are a bit rocky right now. They had me up two of the BP meds I'm on (Enalapril & Diuril) and we are watching weight and BP for signs of worsening fluid overload. I'm not worried at this point. It's kinda par for the course. I still don't feel well though and will be very glad when we make some progress and I'm feeling better. Of course, I am thankful to be feeling this way right now because two years ago at this time, I felt a whole lot worse as I was on 5200 starting 14 day ATG and feeling too awful to even get out of bed some days. I'm a loooong way from that and it makes me smile at God and His faithfulness.

So, friends, I hope my this little update gives you some things you can pray for until I update again with further details. I plan to do it soon as we have a fundraising idea to work on and we want to get info to those of you who have asked to help. Thank you all so much for your prayers and your caring. Please know that you are always in my thoughts and prayers too. I love you all very much. Sign in and let me know you were here and I will get back with an update on my health status and the fundraiser just as soon as I can. Shalom...